Why I Have A Wheelchair: The Game Of "What If's"

By Jed Finley

2 min read

I am a proud wheelchair owner.

I am not, as of yet, a wheelchair user.

Why is this?

Well, I have my reasons.

I have a wheelchair because...

I don't know what my ankylosing spondylitis will do.

Living with AS is unpredictable. Good days and bad days come and go like the tide. The only difference is, the tide is controlled by the moon and AS is controlled by…

Well, I’ll get back to you on that one.

But, we seriously don't know when we will have a flare, when our SI joint will make walking difficulty, or if our knees will just decide they don’t want to hold our weight anymore.

I want my wheelchair for days like this.

I don’t know if I will get injured.

A constant thought I have is that some random blow is going to put me down for the count. A car accident, a kid at school jumping on me, a fall down the stairs…

I have an already damaged spine that does not move like a spine should. What if some physical trauma bends it in a way it should not and I can’t walk anymore?

I want my wheelchair because this could happen.

I don’t know if I will be put in a position where I will need it.

Like most ankylosing spondylitis patients, I would like to live a “normal” life. I would like to go to ball games, see the animals at the zoo, and participate in the annual Autism walk.

But, what if I can’t walk?

I have worked (and struggled) really hard to stay as active as I can. Some days, walking a longer distance doesn’t affect me much. Some days, it's like walking through wet cement, and my knees and hips are grinding with every step.

If I go to the zoo, the ballpark, or a charity walk, a wheelchair would make life a little simpler.

I want my wheelchair so I can still participate.

I don’t know if I would find one so nice again.

My wheelchair was on Craigslist. It was only $10 and it had a really nice cushion (the big deciding factor for me). If I would need a wheelchair in the future, I could see myself doing well with this one. It doesn't take up too much space, so, why not?

The big game of “what if’s”

I play this game a lot. I would rather think about all the possibilities and prepare, rather than be caught off guard.

There is never a moment I am not aware of my AS. It is a constant reminder of my possible future. Having my wheelchair in my basement does not make me feel hopeless. Quite the opposite. It reminds me that even if things aren't perfect, there is something waiting to help. And that gives me hope.

That is why, although I am not a wheelchair user, I am still a proud wheelchair owner.

Tell us what AS is really like.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The AxialSpondyloarthritis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

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CommunityMemberea4be4 Member
<inline-mention username="Nicky-Flikas" user-id="4559751"/> this was my first nerve block I’ve had epidurals for other pain it did help my pain I wish I could find a good rheumatologist it’s a rough road 
1. Jed Finley Moderator & Contributor
 <inline-mention username="pammymae" user-id="5840364"/> Agreed, finding a Rheumatologist, let alone a good one, can be rough. When I first started seeking treatment I called 13 different Rheumys. The next time I needed a new doctor, there were 6 to choose from. I have heard the job is getting very frustrating with many people making appointments who don't actually need their specialty. (At least thats what my doctor told me)
2. Nicky-Flikas-aks Moderator & Contributor
 Is it harder to get one from where you are from a rheumatologist? I am sorry to hear the epidural was not a success. Have you tried biologics before? How are you feeling today? Nicky (Team Member)
CommunityMemberea4be4 Member
My neck is causing me more problems than my back it’s so deteriorated that when I get stressed it pinches the nerves and I get unbearable headaches Had nerve block has helped 
1. Nicky-Flikas-aks Moderator & Contributor
 Hi @pammymae sorry you been having these problems. Do you get nerve block often? I am glad to hear it's helping. How are you feeling today? Nicky (Team Member)
dcran67 Member
You sure hit the nail on the head w that account of what its like to have AS... Prayers for the non flareup days!
1. Jed Finley Moderator & Contributor
 I really appreciate your comment. I'm glad you could relate. And, thank you so so much! I hope you have many non flareup days as well!
vivvianleeinpain Member
I understand, there has been so much I have missed out on in 20 years. A surgery to put in a spinal cord stimulator, a surgery to take it out. My fault, I did not know that it was impossible for the wires to go through. Finally a nurse practitioner said your pain is SI joint not your sciatic nerve from your lumbar spine. Wow some relief. Still no answer the pain between my shoulder blades. Oops I have bamboo spine. My thoracic spine,has fused itself. Now we have a treatment to try. 60 years old and over 20 where I tried to continue exploring the outdoors. Hmm a wheelchair. I will watch craigslist. I have trained a service dog who keeps me from falling but she cannot take care of the fatigue and pain.
1. Jed Finley Moderator & Contributor
 Thank you so much for sharing your story. Yes, so many of us seem to try really huge treatments only to figure out what is actually wrong. Do your research online, find one that sounds like it will work for you. I was really lucky to find one in such good condition. What kind of dog do you have? I'm glad you have her. Dogs can be the best helpers!

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